A few weeks ago, Rolf received a text from the eldest, grown daughter of our good friends Ruben and Marit explaining that due to an online ordering mix-up, we would be receiving a shipment of Charmin toilet paper intended for her family.  🙂  Rolf offered to send it back and help them get their money refunded to which Sarah said not to bother and to consider it a gift!   So sweet!!  Rolf told me about his text exchange with Sarah and was surprised by my reaction.   He couldn’t understand why I was so giddy over toilet paper…to which I replied, “Honey, you don’t get it.  Our entire life together I’ve purchased Kirkland brand TP, this is CHARMIN!  There’s a difference.”  Completely unaware and unconvinced, Rolf rolled his eyes and chuckled at my enthusiasm.  Not long after, Marit (Sarah’s mom) texted Rolf about an unrelated subject and Rolf relayed the TP story to her.  Marit responded, “Wow, she (Sarah) really loves the Geylings!!…not just TP, but Charmin!”.  Ha!  Rolf finally decided there must be something to it but has yet to experience it…we haven’t opened the case of Charmin.  I want to use up all our Kirkland TP first because there may not be any going back once that box is opened.  We could very well be entering a new era in the Geyling household.  😉

The funny text threads with our friends and the shipment of Charmin that followed made me laugh out loud as well as got me thinking…it got me thinking about the hundreds of decisions I’ve made in the management of our household over the years that the family was never really aware of or cared too much about…decisions which led to my systems of organizing and procedures for daily living that made perfect sense to me at the time but could very well be questioned now as I slowly fade from the scene and new systems are adopted.  Many of the decisions I made in the management of our family weren’t particularly important or life altering (i.e. the choice to use economy vs. brand name TP) but they were ALL deliberate…there was ALWAYS a well thought out reason for the things I did – a method to my madness, so to speak – and I now have a strong desire to replay the tape of our family’s life together, if I could, and explain it all so my kids can be assured of my brilliance long after I’m gone.  Ha, Ha!

Instead, I put together a little autobiographical photo book for my family for Christmas and in the introduction, I wrote this…”I used to think that when I came to the end of my life, being remembered would be really important to me. I’m realizing I was wrong about that. Even if I were to live a long, full life, I’d be lucky if the memory of me carried on for another generation. What I’m finding to be of greater value over being remembered is being understood by the people I love.”  The value I place on understanding myself and, in turn, being understood is high which explains why I appreciate processing through this blog so much or why I fear Rolf and the kids regularly asking “I wonder why Mom (fill in the blank)?” as they comb through the cupboards of our lives together or switch up the systems to meet their needs.  Although my mind is occupied with this crazy train of thought and it’s where my heart is now, the good news is that I’m pretty sure whatever legacy I do end up leaving behind will be bigger than the silly questions left in my absence.  😉

On a practical level, I’m actually pretty proud of how gracefully I’m letting go of things that are no longer in my control…I think the emotion and unrest for me simply comes down to grieving the part of me that is lost in the letting go.

 

my story

 

 

Today marks 18 months since we lost Rudy.  The 25th of every month has an impact on my heart but today carries a bit more significance, for sure.  A year and a half.  It feels like a long time and, yet, it also feels like it was just yesterday.  My mind and my heart can be transported to that ER in Guymon, OK in a blink and I am there with Rolf, the big sibs and our boy fully aware of what was happening as I experienced it unfold and in total disbelief at the same time.

I only see Rudy in my memories.  Rolf is having new visions of Rudy in his dreams…comforting in the moment but heartbreaking in the wake of the dream as Rolf so eloquently describes in his latest poem:

This
Is where I see you now.

It’s all I’ve got.

 

Well, “Hate” is a strong word, I guess.  It’s just that Sundays have become my least favorite day of the week…my emotions run highest on Sundays and going to church is both painful and exhausting.  Just like at the rescue mission, Rudy was such a big presence at church and I miss him there.  It’s been almost a year and a half since losing our boy and it still breaks my heart every time the kids are dismissed for Children’s Church.  Memories flood of him gleefully going with a special buddy assigned to assist him, confidently saying “See ya!” as he turned to go or the one Sunday when he walked up to the front of the church just so he could walk back down the aisle and high five everyone on his way out of the sanctuary.  Moments that warmed our hearts then and break my heart now.

It’s ironic, though, too because, of course, church is also a place of great comfort which is why I’m motivated to keep going and not curl up in a ball in bed on Sunday mornings.  I’m motivated to push through the pain to be with my church friends and to glean moments of corporate prayer and worship and teaching that encourage my heart.  Sometimes I wish it wasn’t all so intertwined…I wish there was a healthy way to avoid the pain but then again I can’t help but think that the intertwined nature of our grief is an indication we’re doing something right.  The intensity of our grief should mirror the intensity of our love and if we love well, the grief absolutely will touch every space we occupy.  The goal continues to be learning to co-exist with the pain and not be afraid to hate Sundays sometimes.

Speaking of “loving well”, Max wrote a song recently inspired by 1 Corinthians 13 and his interpretation really speaks to my heart.  It may sound cliche but take it from someone who is nearing the end of her life, nothing we do or become matters AT ALL if love isn’t part of the equation!  Period.  We can spend our lives achieving and accumulating but without love, it is all meaningless.

I hope I can share a recording of Max’s song sometime, but in the meantime, here are his lyrics:

Good Teacher of wisdom I come to you, To learn what I must do.  I so adore the way you love me, I want to love others like you do.

I can sing Your praise in a thousand tongues.  I can pray through pain, give all I own.  I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

I pray You would soften my heart, and make me slow to anger and quick to forgive.  How do I have a heart for those who break it?  How do I love my enemies?

I can sing Your praise in a thousand tongues.  I can pray through pain, give all I own.  I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

You are my God, God of love (3x)                                                                                                        You are my God!

I can sing Your praise in a thousand tongues.  I can pray through pain, give all I own.  I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

(What Is It Worth? -Max Geyling)

I’m glad the kids are all settled back at school and enjoying time with their friends but I sure do miss having them around home during the day.  I miss their fun energy and practical help.  Wilson is big enough and strong enough now that he can just pick me up and carry me to where I need to be.  VERY HELPFUL!!  We are our own version of the children’s classic “Love You Forever”… 😉

Love and more love dear friends!

 

Thank you, dear friends, for your many prayers specific to the flu…I’ve been recuperating at home for the past week and am feeling so much better.  I’m tired and sleepy but I have lots of time to sleep so there’s an easy solution there.  😉  My home health nurse came on Monday to access my port for another round of Radicava infusions and she confirmed my lungs sound nice and clear!  Yay!  The greatest concern, of course, with any bug is that it would turn into pneumonia with my compromised respiratory system and I’m grateful this flu bug didn’t become a serious complication.  I’m potentially contagious for a couple more days so I’ll continue to lay low but with rain on it’s way, I wouldn’t be getting out much anyway.  🙂

I wanted to share the following graphic a friend of ours had made up with the text from my “launching letter” I shared at the SBRM Graduation back in November.  I like the graphic artist’s visualization of the text and thought you might enjoy it too…

Thank you again everyone!  ‘Praying for stronger days ahead for us all.

Love and more love.

 

 

 

The past couple of weeks have been a bit perplexing for me physically…I’ve noticed a obvious loss of function and greater weakness in general.  In addition, on Christmas day I began having these choking episodes that seem to be triggered by muscle spasms that have left me feeling frightened and discouraged.  I started the new year off with a visit to the neurologist yesterday and even though I kind of dread these appts, I was eager to talk to the doctor about the new developments I’ve been experiencing.  Every appt I go to, I rate my function on this universal point system to track the progression of the disease and I typically lose 1-2 points at every 3 month appt…the neurologist questioned the fact that I lost 8 points in yesterday’s assessment.  As a result, she wants me to follow up with another swallow study and lung function test but those have to be put on hold for a couple of weeks as I also tested positive for influenza yesterday.

I’m actually kind of relieved I have the flu as this might explain the quick progression of weakness I’ve experienced.  Maybe my poor score on the ALS assessment is due to it being an “off” day.  I’m praying so and also praying I can nip this flu bug in the bud quickly before it creates greater respiratory issues.  I sure am uncomfortable and can’t cough strong enough as is needed.  Would you please pray for health in our household as the boys head back to their campuses this weekend and Olivia returns to school on Monday?  I’m on Tamiflu now but will be contagious for a week or so.

(I’ve shared similar reflections in the past but it bears repeating as it’s where my heart is today)…Visits to the neurologist  (all of the doctors I see, really) are definitely exercises in emotional steadfastness…I go with these stupid, high expectations of being helped, somehow relieved of my symptoms for even just a moment and walk away reminded that all the medical community can really do for me at this point is to monitor my journey and suggest OTC drugs and supplements that may or may not help “depending on the individual”.  I don’t blame the medical community (I’m very grateful for the care I am getting)…it’s just the nature of the disease and the unmet expectations (no matter how unrealistic) hurt.  I had similar emotional responses to Rudy’s check-ins with his cardiologist and the heart clinic down at UCLA.  If only something specific could have been done pro-actively as opposed to just responding to what his body was doing…if only.

It’s important for me to keep days like yesterday in perspective…emotionally charged, physically exhausting, drowning in “to dos”…it’ll feel lighter and brighter when my body doesn’t ache.  Rolf and I had to do some power-of-attorney stuff yesterday as well…we called Schwab to make sure Rolf can manage/access my retirement account.  I had to talk to the Schwab rep to verify my consent and said “Hi Alex, give me just a minute.  I have ALS and can’t talk well.  Can you understand me?”.  There was a moment of silence and Alex responded “Yes, I can understand you.” and then went on to say ” Thank you for your courage, Mrs. Geyling.  I’m honored to help you today”.  He proceeded to ask me the necessary security questions and we finished our business.  I hung up with tears in my eyes…I engaged in the “task” at hand so matter-of-factly and it was met with this sweet expression of humanity that, frankly, I didn’t expect.  I wish I felt courageous, my friends, (today especially) but I’m grateful for the encouragement nonetheless.  😉  God is present in big and small ways.

And so the new year begins…thank you for continued prayers!

Love and more love.